12 Things Only Someone with Chronic Pain Would Understand

Written by Kirsten Schultz on May 2, 2017

Living with chronic pain makes day-to-day life difficult. It touches every single part of my life, from hygiene, to cooking, to relationships, to sleeping. I’ve been living with chronic pain since kindergarten. If you also live with that four letter word as your constant companion, you’ll probably relate to these 12 things all too well.

1. You never know how you’ll feel in the morning

When you live with chronic pain, every day is an adventure. That goes double for the start of the day. We never know how much pain we’ll wake up with or how it will change throughout the day.

2. People don’t seem to understand what “chronic” means

Loved ones often mean well when they tell us things like, “Hope you feel better soon!” The reality is, the pain doesn’t stop, so it’s hard to know what to say.

3. “Have you tried ___?”

Again, people mean well and want to help. That said, we see professionals to get help with our pain conditions and, more often than not, do a lot of research ourselves. We know our bodies best. If we’re sharing frustrations, it’s usually because we want empathy more than strategy.

4. Some days are easier than others

I’ve been dealing with varying levels of pain every single day for the last 23 years. Some days are a lot easier. Other days are an absolute struggle fest.

5. You LOL when asked questions like, “Do you have any pain today?”

Going to the doctor is a fairly regular experience for us. When you go, they’ll ask if you have any pain and where it is, either verbally or on a form. I can never avoid laughing at this question. I usually feel bad when I do. I know the person asking isn’t doing it out of malice or a lack of understanding, but because they have to ask.

6. Doctors without pain don’t always understand

Healthcare providers are amazing people. They do some of the most difficult jobs in the entire world. That said, there’s a lot that’s misunderstood about pain. Some of the more common misunderstandings are that younger people can’t have chronic pain, and strong medications will always lead to addiction.

7. Managing pain is more than pills

Patches, kinesiology tape, exercises, meditation, self-care … These are all a part of the chronic pain toolbox. We often try a lot before moving on to medication, unless we know meds will be the only things to help the amount or type of pain we’re in.

8. The relief you feel when painkillers start working

Pain affects so much of our lives, including how we interact with others. When relief starts to hit, it helps to eliminate so many of those symptoms of pain. Heck, we even become productive! We go back to being ourselves instead of someone struggling to survive the day.

9. Waiting for those medications brings both pain and anxiety

Whether due to clerical errors, insurance requirements, or stigma, waiting for that next dose to help lower our pain is hard. It’s not about a high, but about relief. These medications make it possible for us to participate fully in life.

10. Still, medications don’t completely remove pain

Pain is still a constant companion. It’s always with us, even when we’re on medication.

11. Pain changes everything …

I don’t remember much of a life before chronic pain, except running around in oversized T-shirts and eating cereal. Others I know have lived vibrant and expressive lives that chronic pain dulls. It changes how we use our time and energy, what jobs (if any) we’re able to do, and every single relationship we have.

12. Support is everything

For the longest time, I didn’t know anyone else dealing with chronic pain. My great grandma dealt with it, she but passed away when I was 11. It wasn’t until I was in college that I met others dealing with chronic pain conditions. It changed so much for me. I began to have an outlet that understood. If I needed to vent about stigma or brainstorm how to communicate my pain to my healthcare team, I had people there. It’s completely changed how I’m able to process my feels around my pain.

Kirsten Schultz is a writer from Wisconsin who challenges sexual and gender norms. Through her work as a chronic illness and disability activist, she has a reputation for tearing down barriers while mindfully causing constructive trouble. Kirsten recently founded Chronic Sex, which openly discusses how illness and disability affect our relationships with ourselves and others, including — you guessed it — sex! You can learn more about Kirsten and Chronic Sex at chronicsex.org.